I hope you don’t mind me posting in here, I am undx’d. But was wondering if I could pick your brains? I normally post in the limbo section.
I saw my neuro this week and he told me to my face that MS is unlikely as although I have the right symptoms, they are just getting worse (especially my legs) instead of new symptoms showing up (presumably for a dx of RRMS?) (He’s previously told me he thinks I have chronic migraines, but this week said he still thinks its a possibility but went on to tell me people with chronic migraine do NOT have the leg problems I have)
I had a brain scan last year which was normal, he has now ordered extra tests for me, one being a spinal MRI, (he thinks a brain one is unnecessary as my last one was clear ??) , and has also asked for a VEP and LP.
After I left his office, feeling pleased that I’m getting extra tests but rather annoyed that he keeps mentioning chronic migraines and telling me MS is unlikely, I read the papers that I was to hand in to reception… They were more enlightening.
He’s written “Possible MS but MRI NAD”
And “Evidence of demyelination ?MS” (During my exam my big toe went upwards, I’m guessing this is what this means?)
And on my blood form he’s written on the top of it “Spastic Paraparesis”
When I came home, I did the dangerous thing of googling!!
I found this in the MSTrust site under PPMS: " Most commonly this is seen as increasing stiffness and weakness of the legs (progressive spastic paraparesis), but other symptoms can occur such as unsteadiness, tremor or visual loss. "
My main symptoms are my legs, (stiff and weak, lots of myoclonic jerks, getting worse) balance issues, (getting worse), minor visual problems and bladder problems. (As well as normal (!) stuff such as pins and needles, partial numbness (legs and feet) burning, electric shock sensations, tiredness, etc etc.
I also found that for PPMS its most commonly found that brain lesions are few if any and there are more spinal lesions. And a VEP and LP is needed to confirm (or rule out)
I am now wondering whether this is what my neuro is thinking?? He’s obviously not one to voice his opinions to me (as he’s already told me he thinks MS is unlikely, but wrote on my notes possible MS ??)
A very quick history of my symptoms: Started in Jan 2007 with p&n in my finger, over the next few months more a more symptoms crept in, mainly dizziness and muscle weakness, stayed for 2 years (no breaks!) Was dx’d with CFS/ME but I disagree! I don’t fit in the main diagnosis criteria. Then I did some mad very controversial brian re training thing, I felt at the time I had nothing to lose and it did put my symptoms as bay for 18 months!!! Since they’ve come back 2 years ago, I have had a couple of breaks (so doesn’t match in the PPMS) but even in my breaks I wouldn’t say I was 100% and my symptoms are gradually worsening, I have had new symptoms, although not many (just the neuro didn’t take much notice of them!) I think I started with a lot of symptoms in the first 6 months and they have just stayed, returned and/or got worse!!
Sorry this is getting longer that I anticipated!
What do you PPMS’ers think? Am I looking too deeply? I know I should have answers soon ish after the tests (hopefully) But I am very curious about it.
I am interested in hearing your stories of your symptoms and how you became dx’d with PPMS.